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Urgent action pledged on over-medication of people with learning disabilities

NHS England has today promised rapid and sustained action to tackle the over-prescribing of psychotropic drugs to people with learning disabilities after three separate reports highlighted the need for change.

Research commissioned by the health body and delivered in three reports from the Care Quality Commission, Public Health England and NHS Improving Quality has found that:

  • There is a much higher rate of prescribing of medicines associated with mental illness amongst people with learning disabilities than the general population, often more than one medicine in the same class, and in the majority of cases with no clear justification;
  • Medicines are often used for long periods without adequate review, and;
  • There is poor communication with parents and carers, and between different healthcare providers.

One of the reports, authored by Public Health England, estimates that up to 35,000 adults with a learning disability are being prescribed an antipsychotic, an antidepressant or both without appropriate clinical justification.

In a letter (also available in easy read) to professionals and patients, NHS England officials have urged the review of prescriptions, and promised to spearhead a “call to action” to tackle these problems, similar to that which has been so effective in reducing the inappropriate use of antipsychotics with dementia patients.

This will involve bringing together representatives of both professional and patient groups for an urgent summit on 17 July, at which an action plan and a delivery board will be established to drive the necessary changes.

NHS England are also considering issuing a patient safety alert to ensure that frontline clinicians and other health professionals are aware of the concerns, and have published information on their website for concerned patients and family members.

Dominic Slowie, NHS England’s National Clinical Director for Learning Disabilities, said: “This is a historic problem, but one that nobody knew the true scale of; that’s why we worked with patients, carers and professionals to get to the bottom of the issues once and for all.

“These medicines can be helpful when used appropriately and kept under review, but the prevalence and the lack of review or challenge that these reports have highlighted is completely unacceptable, and we are determined to take action to protect this group of patients from over-medication.”

While no specific research has been undertaken on the physical health implications of long-term use of such drugs on people with learning disabilities, past studies looking at patients with schizophrenia and dementia highlighted significantly increased risk of movement disorders, anticholinergic effects, stroke and death.

Individuals and their loved ones who are concerned with a current prescription are encouraged not to stop taking medication immediately, but to consult their doctor or supervising clinician as soon as possible.

Gyles Glover, Consultant in public health and Co-Director of the Learning Disabilities team in Public Health England said: “Psychiatric drugs are often given to people with learning disabilities to try and manage challenging behaviour. These drugs have important side effects, but the evidence that they are effective is limited.

“Services are overstretched and care is demanding, so we understand how the use of these drugs can be considered normal or necessary.  However the report, which is the first of its kind, suggests that psychiatric drugs are used more widely than is appropriate and this comes with risk. It is crucial that we build our evidence of what drugs are being used to manage behaviour and how often to support and guide a change in practice.” 

Zoe Lord, Improvement Manager at NHS Improving Quality, said: “We have highlighted a significant need to improve the use of medicines for people with learning disabilities.  Across the country, there is a great deal of variation in practice, and this does not provide the necessary high-quality, optimised, care for everyone.  We have tested new ways of working with our partnership sites, and propose six recommendations to improve care for service users and their families.”

Information for patients and their families and carers who believe they may be affected is now available (also in easy read).

In summary, the advice to patients is as follows:

  • Don’t stop taking medicines or change them without professional medical advice first; doing so could be dangerous.
  • Speak to the person responsible for prescribing these medicines as soon as possible, and ask for them to be reviewed.  This will usually be your GP, specialist doctor, pharmacist or nurse prescriber.
  • Please remember:
    • not all medicines that are prescribed to treat people with learning disabilities are antipsychotic or sedative medicines  – if you have any concerns, please check and speak to the person responsible for prescribing them (GP, specialist doctor, pharmacist or nurse prescriber).
    • antipsychotic and sedative drugs can be effective in treating some people with learning disabilities when used appropriately.

Reports

A report of the primary care subscribing study has been published by Public Health England on the Learning Disabilities Team website.

NHS Improving Quality has published a full report on the pilot improvement project which examined medicines practices and related matters in six sites across England which provide care for those with learning disabilities.

A summary of the CQC’s ‘Second Opinion Authorised Doctor information’ work is available in the letter.  The full report will be published by CQC in September.

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